Endometriosis Stories - Page 4Here are more stories from women who suffer from endometriosis, but we start with a very positive story .......
Update - You can now read Ingrid's full story of healing HEREName: Lola Location: Canada Date: August 2005 Email: licorice@rogers.com Where to start, I wrote a little just a while ago but I'm still waiting to see another specialist, I changed my diet to the endo diet, I’m talking some natural herds and also a lupron shot. But I'm still having bad days some days I can't keep anything down,get really shaky, it hurts to go to the bathroom, it’s very frustrated. Some days I'm just beside myself and don't know what to do, I still try my best to work cause it keeps me going and I have a wonderful boss who allows me to leave early if I’m having a bad day. It feels like flu symptoms sometimes with the pain also. I'm open to any suggestions please or willing to talk to someone else with this horrible endo as a part of our life. Name: Ashley Rios Location: US Date: August 2005 Email: fairy_154@msn.com HI MY NAME IS ASHLEY IM 21 AND I HAVE ENDOMETRIOSIS I DONT KNOW HOW LONG I HAVE HAD THIS BUT IT SCARES ME SOME TIMES BECAUSE I MIGHT NOT EVER HAVE KIDS,I HAVE LOTS OF PROBLEMS WITH THIS MY BODY DOSE NOT WORK RIGHT,I HURT MOST OF THE TIME TO URIENATE OR A BOWLE MOVEMENT OR HAVE SEX ITS A PAIN SO BAD IT FEELS LIKE ICE INSIDE ME.I HAVE BAD PMS I ALSO BLEED WAY TO MUCH LAST TIME I WAS OM MY PERIOD IT LASTED FOR A HOLE 6 MONTHS NONE STOP I THOUGHT I WAS GOING TO DIE I WAS WEAK ALL THE TIME.I'VE BEEN TO DOCTORS AND THEY TELL ME I CANT DO ANYTHING LIKE SURGERY B/C IM TO YOUNG I CRY EVERY NIGHT B/C IM TO YOUNG TO HAVE THIS AND TO THINK I'LL NEVER HAVE CHILDREN.IM GETTING MARRIED IN OCT.2006 AND MY BOY FRIEND SAID WE WILL TRY ANY THING TO HAVE A BABY ONLY IF I CAN HAVE ONE HE WILL BE HAPPY BUT IF I CANT HE WILL LOVE MEANYWAY.FOR ALL THE WOMAN THAT HAVE THIS GOD BLESS YOU B/C IT IS HARD TO LIVE WITH THIS. WITH LOVE FOR ALL OF YOU, ASHLEY RIOS Name: Leigh Nolte Location: South Africa Date: September 2005 email: strangeworldofleigh@yahoo.com I am 26 years old and a virgin. I have suffered from depression, anxiety and had problems with people touching or looking at me for as long as I can remember. Nothing to do with physical abuse. More likely resulting from self loathing. I avoid looking at my own body even when getting undressed. Nobody has even seen my legs. For years and years I thought the CRIPPLING pain associated with my periods was normal. I dreaded them for the whole month. I became addicted to painkillers and still am. I ended up in hospital finally quite recently, 1 August 2005 to be exact, after collapsing on the kitchen floor and lay there for hours screaming and cursing. My period had started. It felt how I would imagine it feels to be shot in the stomach. The very next morning my Mom helped me to the doctor who booked me into hospital straight away thinking either a burst appendix or endo. I thought endometriosis was something that only happened to sexually active women, like cystitis. It was very difficult having to be scrutinized and prodded by various gynaes. I refused to let anyone look inside me. Nobody had ever seen my body before. I was given Depoprevera immediately and it was arranged that a laporoscopy should follow a.s.a.p The Dep caused me to bleed a disturbing black blood everyday for a month. At fisrt I bloated up and had severe breast swelling and pain, but after a few weeks these symptoms subsided. Thank God. I changed gynaecologists at this point because the woman I had been seeing had a rather abrupt 'Oh get over yourself ' manner which was unsettling and frankly unprofessional.I decided to see my mother's gynae.A sweet, kind, gentleman if ever there was one. Like a Father Christmas.But I remain fundamentally wary of all gynecologists. His initial diagnosis was Primary Dismenorrhia.I pushed for a laporoscopy because I couldn't endure an intimate examination. It would have meant that this strange, older man would not only have to see my legs but also break my hymen manually. I would be unconscious during a laporoscopy. That was a nightmare all it's own. Surrounded by nurses, knickerless and terrified, I awaited the op in the ward, fighting panic attacks and tears. Being wheeled down the corridor was on par with a walk to the electric chair. MEN were going to be LOOKING AT ME and doing UNSPEAKABLE INTIMATE things to me. I almost fainted several times. Indeed I had to be cut and widened inside so that my uterus would be accessible. I am no longer a virgin now. The diagnosis is SEVERE ENDOMETRIOSIS. I have pockets of internal bleeding and endometrium extensions on just about everything outside but luckily not inside my womb. My doctor decided an injection of Zoladex(Goserelin) would help to dry up the pockets of blood. By the way, Zoladex is a long, thin, absorbable crystal implant, inserted diagonally into the surface flesh of the abdomen. Interesting. I am now experiencing menopause at the age of 26. I have noticed that I'm gaining weight and having mood swings. Even more than my usual pathological ones. Suicide is constantly on my mind these days. I am to see a Belgian specialist at the end of this month. From here on it's uncertain terrain. If the hormone treatment doesn't work a partial hysterectomy might be needed. I might never even have the option of having children. I have many more operations to look forward to. But thanks DR SHERWOOD. You are a kind man. Written by Leigh. Endo sufferer and general sufferer from South Africa. My best, best wishes to all other ladies with this disease. Name: Trisha Young-Sneed Location: United States Date: October 2005 E mail: reception@spmflo.com I was diagnosed with endometriosis at the age of 19. Just out the blue one day I had a terrible pain, and blood began running down my legs as if I had been shot. After going to the ER they notice that I had endometriosis and the disease had pushed my right ovary behind my uterus, so I had to have surgery right away. Well, that was 8 years ago, and I still suffered with the disease. My doctor placed me on Depo Lupron for 2 years (20-22). After that they were so sure that I'll never suffer again! Not true, At 23 I had to have the lapscoptomy, because the disease had spread over my uterus and ovaries. Next, they tried Depro Vera, that did not work either, so after being told that I'll never have a child, and to deal with the pain, I finally had my daughter Lauren and I had an total hysterectomy 3 months ago and I feel great. So I just want to encourage the ladies to hang in there, if you planning on having a child or children take Depro Lupron, first sight of your period, after the treat is over that is the best time to try to conceive. Ladies, please stop being some ones cutting practice dummy, you know what your body can take and can handle. Having a hysterectomy has been the best thing that happened to me since I had my daughter 2 years ago, when all the doctors said that the endometriosis had damaged any chances for me to conceive, keep the faith and keep trying. Stay strong, Trish Name: Zandi Location: United States Date: October 2005 E mail: zandizane@hotmail.com I was diagnosed with endo. at 14. I had two surgeries that resulted in a lot of scar tissue. I was told I'd never have a baby without help. That was five years ago and since then I got married and got pregnant on my honeymoon! Now we have a 4 month old son and can't wait to have another! Name: Brenna Kern Location: United States Date: October 2005 E mail: KERNB0142@uwc.edu Brenna is lonely and desperate and is looking for support if any of you can help her. October 25th, 2005 My name is Brenna and I am from a little town called Spooner (in Wisconsin). I've been reading womens' stories about endo from many places. I am 20 yrs old (21 in Nov.) and have recently been diagnosed with endo (I had my laparoscopy on August 5th of this year). Here's my story, its short, compared to many... but you're the only one I've emailed who will actually understand. I got my first period two days before 4th grade, I was 8 yrs old. I was so scared, and felt alone. As I got older I assumed that monthly period pain was normal because I have an older sister who told me of her cramps and irritability, and my mom too. Periods were always heavy until a few years ago. I had an ultrasound and my dr. had said that there was a cyst on my ovary about an inch in diameter. He said that was a decent size for a 16 yr old, and probably wasn't done growing (not that he thought it was good or anything). It was the kind of cyst that bursts right before or during your period where you are in so much pain that you can't move. It burst when I was in school one time; I was bending down to get a pen that had fallen... I couldn't get up for 10 minutes. I wanted to cry. I had another cyst burst when I was walking up my deck stairs at home after school one day. I had a backpack full of books when it happened, and all I could do was hold on to the railing for dear life... or else I would have fallen backwards. It hurt so bad. I was put on BCP when i was 17, to control the cysts, no big deal. I thought it was working. I assumed it was working. But I continued to have mild pain before, during, and after periods. I dismissed it as cysts, and "toughed it out" month after month in the beginning. Recently (a year or more), there has been continuous pain between periods, and then some... but I continued to "tough it out". Pain had been increasing during periods and for a little over a year now, the pain had become extremely horrible between periods as well. Again I thought that was normal and just prepared for my monthly friend to drop by for a visit. Midol had become my best friend... but still didn't work. For over a year, the pain has increased greatly with sex, going to the bathroom, and even walking around. The only thing that keeps me going is the motivation of college. There have been many days that I could have easily (and should have) stayed in bed because of the pain. I didn't understand it. I had never heard of endo before. I had finally made an appt. to see my family dr. after a horrible night of excruciating pain during and after sex. My boyfriend insisted that I see a dr, even though I just kept dismissing it as a cyst all the other times. My family dr. did a pelvic exam, and that hurt like hell. He said that he didn't feel a cyst but that could be because it may have ruptured when he was giving me a pelvic exam, so he made me an appt for the same day to get an ultrasound. No cyst. So he recommended that I see a gyno. I couldn't get in for a month. Finally! I saw my gyno for the first time. He told me that we could either switch my pills for a few months or do a laparoscopy. The risks were either the pills wouldn't help or they would, or that a laparoscopy would find endo or not endo (or something else) and then i would have been cut into. I told him that I didn't care about scars from a laparoscopy because I had had one a few years before to get my gallbladder removed. I didn't want to wait to see if another pill had worked, I had already been on a BCP for a few years... So I had the laparoscopy a week and a half later. He wrote on my take home sheet that he found endo and removed what he could see, and that we would talk about treatment options at my follow-up. My follow-up wasn't til 2 1/2 weeks later. And I was still in pain (and not because of the surgery). I went to my follow-up and asked him how much longer until I feel no pain. He said, "You're still feeling pain?" I said, "yes". He told me to wait a bit and come back and see him in a month. I made it no longer than a week before I went back to see him. He told me all about Lupron and said that that would be my best bet for pain and feeling better. So I scheduled an appt to get my first shot. I got my first hot flash the next day, and countless other times until now... they suck as well as the night sweats, migraine and borderline migraine headaches, body aches, fatigue, not sleeping at night, and everything else. I'm almost to my 3rd shot, and I am still having horrible pains that keep me up at night, make me doubled over, not concentrate on other things (like school), and cry. It hurts. I have no close friends or relatives that have endo to talk with, and therefore don't fully understand. I don't even really have anybody to talk to about the "menopausal" symptoms... And everybody thinks I'm exaggerating. I don't want to continue Lupron if its not going to work for me. I lie awake at night, unable to sleep, in pain, with tears streaming down my face. I'm usually good at hiding that from my family... I've been so moody and rotten to them these past few months that I feel bad showing discomfort- although they can usually tell when my face is distorted, showing much pain. I would try to exercise or do other activities to help, but at this point I have no energy. I have my appt in about a week, and was thinking of asking for a referral to Mayo Clinic in Rochester, MN for a second opinion. Do you have any suggestions? I hate this stuff. Best of wishes to all... Feeling Lost and Alone With my Endo, Brenna Name: Nancy Location: United States Date: October 2005 E mail: ncbeck@yahoo.com Wow, where to begin. As many others have written, I had very painful periods as a teenager, but everyone said it was normal. I got married when I was 22, went on the pill immediately. Regular periods, no pain. Then, in my late 20's, hubby and I decided to try for a baby. Pain again, no pregnancies. Then hubby lost job, put kids on the back burner. More and more pain as I progressed through my 30's, and still no pregnancies. I resented going to fertility doctors, as I thought they take advantage of people and try to shove every drug known to man down your throat. Adoption was out for the time being, as both hubby and I have to work (we live in New Jersey where the price for living in even a modest house, like we do, is expensive). That to me is most depressing, even more so than the abdominal pain. I can't tell you how many times I've cried or gotten angry when I hear people going on and on about their kids or their grandkids, but I try to keep a stiff upper lip and try to be upbeat along with them. -In 2001, the pain in my abdomen was so bad I could barely drive to and from work. I kept it from my hubby because he was going thru a tough time himself, but it eventually caught up to me, with having to fashion a hot water bottle at work and popping ibuprofens and naproxens (NSAIDs)...except they weren't working anymore. I finally went to see a local family doctor, and the nurse practitioner (they aren't full fledged nurses but have medical backgrounds and degrees) really listened and took an X-ray. Lo and behold, she found a mass on my bladder - no wonder I was going so often to the bathroom and hardly anything was coming out! It was scary, but I wanted to know what was going on. Went to see a specialist (works with problems in the bladder, among other things), said I had to have surgery to see what the mass was and get it out of my bladder. First surgery I ever had - at age 39! Great hospital, and the nurses there raved (in a good way) about my doctor. Haven't had problems with my bladder since, thank goodness. The weird thing about this surgery was that I had to have a bag hooked into my urethra, to circumvent the bladder while it healed. It was like being an old Wild West gunslinger, with my holster (the bag) tied to my thigh! :-) But at least I could keep it out of sight. Unfortunately, my pain free times didn't last, and I became stressful almost immediately, this surgery was in September 2001; I was at home, resting and watching TV, on September 11th, and actually saw the 2nd plane hit. My 2nd surgery occurred in February 2002. My gyno suggested it when she took some ultrasounds and noticed a lot of crap in my abdomen. Laprascopy wasn't going to cut it, no pun intended; the more severe laparectomy, where I was fully opened up, would have to be done. But first, she sent me to a specialist to try to interest me in Lupron. After doing internet research, I decided against it, and told the specialist so. Not an easy thing for me, as I'm a pretty shy person, esp. in front of doctors (just dangle a medical degree in front of me and I'll usually clam up real fast!). Anyway, I dug in my heels and said no Lupron, for which I am thankful for to this day. My gyno did the surgery 2 weeks before she was due to give birth, so she had another doctor with her to help out. Hubby later told me he wanted to rip out some stuff, but my gyno said I didn't want to do that. Thank goodness. And where did that doctor get off saying that anyway? After the surgery, my gyno suggested going on the pill to take care of the pain. At first I didn't want to, but as I didn't see anything else out there at the time, I decided to try. Mistake. I decided to try the 3 months continuous pill taking (4 month is the period). This worked okay the first couple of times, then my mind went on the blink. In the middle of a sentence, if I didn't concentrate, I'd forget what I was talking about. I knew something was wrong, but I didn't know what. I was so depressed, but I kept looking. One day I happened upon a website, one by a doctor named Dr. John Lee. He'd done a lot of research on endo and trying to find natural cures (or at least, easements). He talked about natural progesterone, and the more research I did, the more I wanted to give it a try. I bought and downloaded his ebook on perimenopause. Reading thru it, I happened upon something that made me sit up and take notice - he talked about the symptoms I was having at that very point in time! That the pill can mess up your mind (paraphrasing here). I found natural progesterone at a health food store near where I live, and I still use it to this day. Not exactly a cure, but it takes a bit of the edge off. Still having pain, I did more research. I came upon a site early in 2005, called Sensible Health (http://www.sensiblehealth.com). The lady who owned the site (a chemist by training, I believe), had overcome her endo (the pain was negligible). She claimed it was a combo of stress and liver congestion that was causing the pain. So I tried her formulas, Coptis and Chinese Bitters. The Coptis I use at night on an empty stomach before going to bed. This has helped me sleep thru the night. Chinese Bitters...has sort of helped. I still have pain, but this might be because I've taken so many NSAIDs over the years. But maybe it will work for someone else. I'm now researching serrapeptase, which I just happened upon, here late in 2005. It's an enzyme that sort of "eats" scar tissue. I'm willing to give it a try, as the pain continues (esp. after I've had my period). Thank goodness I continue to workout at home, with strength training, cardio, and yoga. Exercise has also taken the edge off a bit, and once I'm past a certain point in my cycle, I can have little to no pain in my abdomen. Of course, I want to get to the point where I have negligible pain. If serrapeptase helps me to that goal, it will be worth any price. DON'T GIVE UP!! Namaste. Deb Kirby Location: United States Date: October 2005 E mail: abbashouse1@bresnan.net A message from Deb that I feel needs to be taken on board by all women with endometriosis. She obviously does not want to frighten other women, but all the possible consequences and symptoms of this disease need to be known. I have amended the wording on the website in response to her message. Thank you Deb for highlighting this very serious issue. Her message is as follows… ENDOMETRIOSIS COULD BE FATAL !!! For any woman suffering from this dreadful disease, please do not be alarmed by my story, but rather make sure you get the medical attention you need, getting 2nd, 3rd, and 4th opinions if necessary, so that you do not end up with life threatening consequences like I have. If my condition would have been treated on time, I would not be writing this unfortunate letter. To Whom This May Concern; I am constantly reading that endometriosis is not fatal. I am hoping this statement is said in ignorance, and not deliberate deception. I am writing to inform you of the truth regarding this statement. You should change your assessment to RARELY fatal. I am right now suffering from a massive DVT (deep vein thrombosis) in my right leg and blockage of the circulation in my right leg due to ENDOMETRIOSIS !!! The endometriosis tissue formed in my right leg causing it's scar tissue to wrap around my veins and arteries. For five years I told the doctors there was a painful mass in my groin. I was constantly told it was a lymph node and brushed off as being anxiety prone. When I ended up in the hospital five years later (2004) with a massive DVT from my groin to my knee, the Doctors could not figure out why, since I had no predisposition for blood clots. I told them again "IT'S THE MASS IN MY GROIN". They continued to balk. Finally I went to a female physician who ordered a biopsy on the mass and discovered, as I had long suspected, ENDOMETRIOSIS. It had traveled out of the normal area, and was now compressing the veins and arteries in my right leg. I've been to Mayo Clinic and to the cream of the crop of physicians who all say that surgery is too risky because of the large veins and arteries involved. I was on blood thinners, but was taken off them when I ended up in the hospital with my fourth brain hemorrhage in February of this year. Medical science has basically given me up to die. They say they can no longer treat the life threatening blood clots with blood thinners because of the history of brain bleeds. You may contact me for proof of this anytime you wish. I can send you my records if you like. I have a thick book of them for the last two years regarding this endometriosis causing the life threatening DVTs. I have suffered more than you can ever imagine from this endometriosis. This needs to be made known to doctors and women alike. I don't want anyone else to suffer this nightmare, as I sit here like the doctors say "A ticking time bomb" and read that ENDOMETRIOSIS IS NOT FATAL!!! IT CAN BE FATAL !!! YOU HAVE A RESPONSIBILITY TO LET WOMEN AND DOCTORS KNOW THIS FACT !!! Sincerely, Deb Kirby Name: Doris Location: Australia Date: Nov 2005 Email: dotkajest@hotmail.com To Katrina - I have the same thing happening to me at the moment but I am due to go to a specialist next week.. the pill didn't work on me. I don't know what is up next but I guess I just wanted to let you know that you are not alone so hang in there.. Doris Name: Jennifer E Location: United States Date: Nov 2005 E mail: frogge713@cox.net My story began my freshman year in high school. Every time I would have a period I would miss school to be curled up in bed in pain. I was told by my doctor to take ibuprofen. Now if anyone has had any real pain they know ibuprofen isn't going to do squat! I then sucked it up until I was in college ( age 20 ). I went to GYN doc. She wanted to give me birth control. That worked for 2 months. She then wanted to me to take a warm bath! I said no thank you and got a new doc. My next doc wanted to do surgery as soon as he heard my history. Two months later, I had my first laproscopy/hystroscopy. As soon as I came to after surgery he said, "I have not seen that much in someone your age ( age 22 ) ever." He then proceeded to show me the pictures. I had growth ( is that what’s its called?! ) all over my uterus, both ovaries, and a major artery. Eleven days I got pregnant. Nine months later I have a beautiful baby girl named Alexandra! My pain started almost immediately. Alexandra was born 2-25, and on 5-15 I had another surgery. After this surgery my doc told me he had rarely seen endo return as quickly as mine did. Now I have no insurance and am taking 4 bc pills on and off again trying to maintain some sort of normal life and cycle! My next step is herbs and if that doesn't work I will consider hysterectomy at 24! Any one who has ever cried in pain, know you are never alone as long as I still have a uterus! Name: Lisa Kloberdanz Location: Canada Date: Nov 2005 E mail: lisaannk@shaw.ca BEWARE OF LAPAROSCOPYS!!! My symptoms are: EXTREME pain in my pelvic region and lower back, Loss of control of bodily functions when the pain hits, Passing out and dizziness, I believe I go into shock from the pain, (sweating so much my clothes and hair get SOAKED, but feeling extremely cold and cant get warm), Throwing up, Movement is impossible from the pain, Sensitive to motion and light around me. I have spent a good portion of my life in and out of the hospital from Endometriosis. I was 13, and I told my mom that I had a stomach ache and wasn’t feeling good. In a matter of 20 minutes, I was on the floor screaming, blood curdling screams! My mom was horrified and I was terrified. I remember my mom saying to the doctor, "Please tell me that my daughter doesn’t have what I used to have." And that’s when I was diagnosed with SUPPOSED "Dysmennohria." Age 13 to 19 - I was using 5 Extra Strength Tylenol to get rid of the pain, but it didn’t work. No one would look at me....I was a teenage "drama queen", and I was "over-reacting". Age 20 - 25 - In the hospital 2 times a month, at the beginning of my period and the end, trying to get any pain killer I could so that I could walk and move. And all I got from the doctors was "We cant help you." I was put on birth control pills to help with it, but my endo is so bad that I think it has ruined my immune system. So when I was on birth control I would get serious, non-stop vaginal infections. Age 26 - I got a laporoscopy and was put on hormone treatments for a little while, until they stopped working. Age 28 - I started getting extreme pains in my right side, almost like an appendix attack. After the ultrasound I was given, I was told that the laporoscopy probably made the endo SPREAD!! I am now on morphine and perkaset, with my doctors 24 hour phone number handy. There is maybe 5 days out of the month on average that I don’t have cramping. One week out of the month is the severe pain. I was told to have children right away so I can get a hysterectomy. My husband stays strong for both of us, because I don’t even want to get out of bed some days.....I'm SICK OF BEING SICK!!!! Now we want children.....and how do I handle the fact that I might never have children? No one understands unless they have the disease. I am lucky to have such a wonderful husband to help me through this, because I have lost all hope and cry a lot because of my frustration. Name: Barbara DeYoung Date: Dec 2005 Email: deyoub77@msn.com I am 28 years old and I am living in pain 3 out of 5 weeks of the month. I am at the end of my rope. Nothing helps the pain. I have tried Lupron, surgery, BC, and nothing helps. It hurts so bad that I want a hysterectomy, but my doc won't do one. I can't live this way with the N/V, heavy bleeding, pain and nothing helps. Can anyone tell me of a specialist that can help? A treatment? Anything? Please. I know someone has had to gotten help out there! I am desperate. I am on heavy narcotics and Toredal half of the month. I know that this isn’t good for you, but I don't know what else to do. Name: Frances Laming-Vancer Location: Canada Date: Jan 2006 Email:frances@hrconcepts.ca I had a total hysterectomy at 40 years old. I was told that I had massive endometriosis and part of the growth was attached to my bowel. The doctor actually snipped my bowel as a consequence and I had to return to the hospital for another 11days and was put on a liquid diet for 3 weeks I was put on HRT Premarin and went through the trying period of adjustment to the pills, and finally found the dosage that I was able to tolerate. He also said that I didn’t have to worry about the endometriosis as they had gotten it all. I am now 66 years and 26 years later I am still on Premarin because the doctor who performed the surgery, my geno, convinced me that I needed the replacement for my hair, bones and heart. After all these years, I have lost my doctor, who has retired and my family doctor died just recently, and the new family doctor wants me to get off my HRT cold turkey, ( one pill every three days for a Month) i have since seen another doctor who has given me my prescription but has reduced the dosage and I am now having sleepless nights and crying spells. I am now finally looking at alternative medicine to reduce/ eliminate my HRT altogether. I have a deadly fear of osteoporosis and really anger that I have been left on this HRT for so long without looking at perhaps the hormonal balance in my body. I feeling very frustrated because my new family doctor does understand the changes that are taking place right now and the fear that have because of all the information on the internet that is contradicting his view of HRT. Name: Laura Location: United States Date: Jan 2006 Email: lalah1804@yahoo.com ~Scared I am 20 and I had no clue what all the pain was. I went to the doctor and he told me that it could be either an infection in my cervix or endometriosis. I took some antibiotics which help a little with the pain (just as the doctor said that it would) but it didn't stop the pain. I didn't think anything about it because I didn't know much about endo so I just went on with the pain. The pains probably started a little after I started my period, which was when I was 13. I always had really bad cramps when I had my period.. you know that type where you would hunch over and cry and miss work or school. I just thought that was how they were supposed to feel. Anyways.. My sophomore year in high school the pains got so bad that my dad rushed me to the hospital. They did a sonogram and everything. I knew that something was wrong because when the lady was doing my sonogram she was like are you sure that you haven't eaten anything (I wasn't suppose to eat for 12 hours and I was suppose to drink 8 glasses of water before I went) she seemed to see something, but when the results came in the nurse told me that I was fine and then sent me home and that was it. Now my pains are so bad that I cry most of the time because it hurts, it has affected my relationship with my boyfriend and my friends because I am always complaining of the pain. I am really scared that I won't be able to have kids, which has affected my relationship with my boyfriend because now I am wanting to have kids and he is not ready. I have a doctor’s appointment on January 16 to determine how bad the endo is. I have bad cramps on my period and stabbing pain when I don't have my period. I am starting to have painful bowel moments and I have pains in my lower back all the time. I am scared of what the doctor will tell me. I guess I will find out. Name: Amelia Date: Jan 2006 Email: amelia_s5@hotmail.com have read all your stories, and it is so comforting to read about other people that have the same problems as me. Mine story started when I was 12 and my period began. For the first few months it was pretty light with no pain. But than I began to get cramps, and heavier periods, and clotting galore. It was horrible. I was put on birth control when I was 13 to help with the pain and try to regulate my periods, as I was having them not even two weeks apart. When I was 14, I had my first lap. It was determined that I had minor endo. But those 4-5 months after the surgery were so great. They had burned what was three off, and well no pain. After the surgery I was put on another pill to try to help the bleeding again. Of course this one didn't work either. When I was 16, and about five different kinds of pills later I was put on Danazol to put me into menopause. This worked wonderfully. I took it for the nine months hardly any bleeding or anything. But then like all good things I could only be on it for a while. So back to the pills, which again didn't work. I had my second lap when I was 17, and again minor endo, and of course new pills. However, this doctor did help by finding that I am producing way too much estrogen. When I was 18 I was put back and Danazol and for some reason my body couldn't tolerate it this time. I was bleeding all the time, and had major weight gain. So, back to the pills. I am 21 now. I was recently on pills, go figure right. But over the last two years I have gotten worse. My Doctor always asks when I plan on having kids (I think he knows more than he is letting up). I was also told recently that my uterus and ovaries are extremely swollen. I have been on so many birth control pills, and through the Danazol process I am at my wits end. Last week I was put on the Depo shot to see if that will help. So far: a lot of bleeding, and emotional ups and downs just after the first week. Now that I have had the shot I hear all the bad stuff. I’m not sure about this either. My fiancée and I are not planning on having kids for at least 2 more years, and we all know the pills aren't helping me. I just don't know what to do anymore. But it is comforting to hear that there are women out there that have the same probs I do.
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